Building on Collaboration to Improve Services for Children and Youth with Autism Spectrum Disorders
and other Developmental Disabilities: Need Assessment Survey Report
Annalisa Ekbladh
Center for Disabilities Studies
Laura A. Rhoton, Ph.D.
Delaware Education Research and Development Center
March 2013
Center for Disabilities Studies
University of Delaware
Newark, DE 19716
Introduction and Methods
In late 2011, the Autism Spectrum Disorders project distributed a needs assessment survey to three
groups of individuals in Delaware: 1) Parents/guardians of children with autism spectrum disorders; 2)
Caretakers of adults with autism spectrum disorders; and 3) Adult self-advocates with autism spectrum
disorders. Each group received a slightly different version of the survey. In all, 271 parents/guardians of
children with autism spectrum disorders, 91 caretakers of adults with autism spectrum disorders and 19
adult self-advocates with autism spectrum disorders completed the survey.
Needs Assessment Survey Instrument
The needs assessment survey included questions addressing the following themes:
1)
2)
3)
4)
5)
6)
Receiving a diagnosis and follow-up care.
Barriers and limitations to accessing health care.
Employment challenges for adults with autism spectrum disorders.
Family impact.
Service needs.
Unwanted outcomes.
The survey was modeled after a similar survey distributed in Pennsylvania by the Center for Autism
Research. Survey questions were modified slightly to apply to Delaware. Modifications included asking
questions about Medicaid providers and how far families traveled to see a provider.
This survey was distributed in late 2011 in both paper form and online. A paper copy was sent via mail
by the Delaware Department of Education and Delaware Division of Development Disabilities Services
Services and links to the survey were included on websites for the Center for Disabilities Studies, Autism
Delaware, Parent Information Center and Delaware Family & Voices. In addition to including a link on
their website, Autism Delaware also sent a link to the survey via their list-serve. Information about the
survey and a link was also included in a newsletter published by Project Bridge.
A statement at the beginning of the survey instructed parents/guardians of children and caretakers of
adults to either fill out a separate survey for each child with autism, or, if only filling out one survey, to
complete questions for their oldest child with autism. Adult self-advocates with autism were instructed
to answer questions regarding their current situation.
Data Analysis
Analysis and reporting of the survey data was conducted by staff at the Delaware Education Research &
Development Center and modeled after the Pennsylvania Autism Needs Assessment report produced by
the Pennsylvania Department of Public Welfare. The data presented are meant to give a picture of the
issues surrounding treatment, services, employment outcomes and the impact of having a child with
autism spectrum disorder on care takers and family members in Delaware. Data are presented in
frequencies and percentages. Examples of substantive interpretations of data are presented below each
chart.
Diagnosis & Follow-Up Care
Autism Diagnosis
n=377
1%
1%
21%
17%
0%
Asperger's Disorder
Autistic Disorder/Autism
Childhood Disintegrative
Disorder
Pervasive Developmental
Disorder (PDD/NOS)
60%
Rett Syndrome
“60% of those who reported a primary diagnosis, reported “autistic disorder/autism…”
Autism diagnosis statistics calculated by combining the frequencies for the school age, adult and adult
individual surveys. Comments made in the “other” category were not included or re-coded.
Mean Age (years)
Receiving a Diagnosis
10
9
8
7
6
5
4
3
2
1
0
5
1
2
Pre-elementary
(n=29)
3
2
Elementary (n=97)
2
Middle/High
(n=138)
Age of first concern
2
2
Age of first diagnosis
Adult (n=94)
“Among the children who are now pre-elementary age, the mean age of first diagnosis was 2.1
years…”
Age of first concern and Age of first diagnosis derived from school age and adult surveys (not assessed in
adult individual). Mean age was calculated for each age category. Results are depicted in means. I kept
the decimal places because it is mean age. Vertical Axis altered to represent 10 point scale.
May 31, 2012
Page 1
Diagnosis & Follow-Up Care
Where did your child receive his/her diagnosis?
31.9, 32%
Physician or Medical Center in
Delaware
Physician or Medical Center not in
Delaware
68.4, 68%
“32% of those who reported to have received their diagnosis outside of Delaware…”
Percent
Data derived from school age and adult surveys (not assessed in adult individual). N=314
45
40
35
30
25
20
15
10
5
0
Prior Diagnoses
42
40
34 35
Preelementary
(n=29)
28
20
19
13 14
11 10
66
0
16
12
01
42
00
33
5
0
22
00
4
6
3334
0
Elementary
(n=97)
0
3
7
01
56
7
1
4
5
343
5
Middle/High
(n=138)
Adult (n=94)
“35% of parents/guardians of middle/high age students report developmental delays as a prior
diagnosis …”
Prior diagnoses data derived from school age and adult surveys (not assessed in adult individual).
Disorders arranged in ascending order by % reporting.
May 31, 2012
Page 2
Diagnosis & Follow-Up Care
Number of Professionals Seen Before Getting a
Diagnosis
50
38
Percent
40
47
44 43
43
36
33
30
19
20
14
30
21
17
1-2 Professionals
3-4 Professionals
5+ Professionals
10
0
Pre-elementary
(n=21)
Elementary (n=80)
Middle/High
(n=122)
Adult (n=92)
“Among the middle/high age category, 47% saw 1-2 professionals before receiving a diagnosis…”
Data derived from school age and adult surveys (not assessed in adult individual). Vertical axis altered to
represent a 50 point scale.
Age Group
Follow up
Appointment
Referral for
Assessment
Referral to
Treatment
Referral to Early
Intervention
Referral to
Support Groups
Referral to
Website,
Literature
None
Follow-Up Services by Age Group
Pre-elementary
Elementary (n=97) Middle/High
(n=29)
(n=138)
8
42
58
27.6%
43.3%
42%
8
34
33
27.6%
35.1%
23.9%
5
16
25
17.2%
16.5%
18.1%
18
49
56
62.1%
50.5%
40.6%
5
32
30
17.2%
33%
21.7%
6
36
40
20.7%
37.1%
29%
3
10.3%
10
10.3%
15
10.9%
Adult (n=92)
39
42.4%
22
23.9%
20
21.7%
42
44.6%
21
21.7%
9
9.85
14
14.1%
“Of those caring for pre-elementary children, 17.2% are referred for further treatment…”
Derived from school age and adult, not assessed in adult individual. Sample size represents the number
of people who responded to this question.
May 31, 2012
Page 3
Family Impact
Unmet Need for Family Support Services
5
Parent Mental Health Counseling
15
14
21
11
Parent Support Group
7
Sibling Mental Health Counseling
11
7
23
27
24
14
Middle/High (n=138)
Elementary (n=97)
9
Sibling Support Groups
22
17
10
Family Counseling
21
14
0
5
10
Adult (n=94)
15
20
Pre-elementary (n=29)
24
23
25
30
“27% of caregivers of elementary aged children report an unmet need for parent support groups…”
Data derived from question #48 (school age and adult). “Unmet need” calculated by combining ‘my
family is receiving but needs more’ and ‘my family is not receiving, but needs.’
1
Family Impact
Barriers to Accesing Family Support Services
282728
30
25
20
14
15
10
5
7
18
15
10
10
5 6
23
20
17
15
11
13
12
8
14
8
3
6
9
17
12
8
0
0
Pre-elementary (n=29)
Elementary (n=97)
Middle/High (n=138)
Adult (n=92)
“28% of caregivers of pre-elementary children report a shortage of service providers in the area as a
barrier…”
Data derived from question #51 (school age and adult).
Unmet Need for Care Services- School Age
35
30
32
25
Pre-elementary (n=29)
20
20
15
10
5
16
10
15
10
14
13
Elementary (n=97)
Middle/High (n=138)
9
0
Babysitting
Afterschool Care
Weekend Care
“32% of caregivers of elementary aged children report an unmet need for babysitting…”
Data derived from question #48 (school age). “Unmet need” calculated by adding ‘my family is receiving
but needs more’ and ‘my family is not receiving, but needs.’
2
Family Impact
Unmet Need for Care Services- Adult
20
18
16
14
12
10
8
6
4
2
0
17
10
Respite Care
Adult Day Care
“17% of caregivers of adults with autism report an unmet need for respite care services…”
Data derived from question #48 (adult). “Unmet need” calculated by adding ‘my family is receiving but
needs more’ and ‘my family is receiving, but needs.’
Change in Workforce Participation
Decreased Work Hours
30
Changed Employer
15
Lost promotion/advancement opportunities
13
Terminated from employment
5
Disciplined/suspended
5
Increased Work Hours
2
0
5
10
15
20
25
“31% of caregivers of children and adults with autism report a decrease in work hours…”
Data derived from question #36 (school and adult).
3
30
35
Service Needs
- Grant Number: H6MMC22713
- Building on Collaboration to Improve Services
for Children and Youth with Autism Spectrum
Disorders and Other Developmental Disabilities
- University of Delaware’s Center for Disabilities
Studies
- Annalisa Ekbladh
50
Percent
40
30
20
10
Co-occurring Disorders
43
30
30
23
17
17
9
6
5
4
4
3
3
0
Total n=383
“Of those reporting a co-occurring disorder, 43% report developmental delays as the co-occurring
disorder…”
Co-occurring disorders statistics were calculated using Question #15 from the school age survey, #15
from the adult survey and #9 from the adult individual. Disorders put in descending order by %. N=383
May 31, 2012
Page 1
Service Needs
Data sources: school age, adult, adult individual.
Mental Health Counseling
20
17
18
16
16
Percent
14
12
12
12
14
10
Unmet need
8
Dissatisfaction
6
3
4
2
1
0
0
Pre-elementary
(n=29)
Elementary (n=93)
Middle/High
(n=129)
Adult (n=94)
“16% of parents/guardians report an unmet need for relationship counseling for their middle/high
school age children …”
Relationship Counseling
16
18
16
13
14
Percent
12
10
Unmet need
6
8
6
Dissatisfaction
4
4
2
2
0
0
0
Pre-elementary
(n=29)
Elementary (n=93) Middle/High (n=129)
Adult (n=94)
“6% of parents/guardians report dissatisfaction with relationship counseling for their elementary age
children …”
“Mental health counseling” and “Relationship counseling” (questions 44 and 46, school age and adultsatisfaction not assessed in adult individual). Previously reported in one chart entitled “mental &
May 31, 2012
Page 2
Service Needs
emotional health services”- statistical problems led to separating the two items out. ‘Unmet need’ is
calculated by combining items: “my child is receiving but needs more” and “my child is not receiving, but
needs” (Question 44 school age). ‘Dissatisfaction’ is calculated by combining items: “disagree” and
“strongly disagree” (Question 45 and 46 school age and adult). Crosstabs were calculated by age
category for both ‘Unmet need’ and ‘dissatisfaction.’ Data sources: school age, adult (individual does not
assess satisfaction so I left out).
Mental Health Counseling
30
25
24
Percent
20
18
15
14
10
12
Receiving
10
5
Not receiving but needs
9
9
3
0
Pre-Elementary
(n=29)
Elementary
(n=97)
Middle/High
(n=140)
Adult (n=113)
“12% of parents/guardians report that their elementary age children are not receiving but need
mental health counseling….”
Mental Health Counseling graph was calculated using Question #44a (crosstab)- categories: “My child is
receiving” and “My child is not receiving, but needs.” Age groups: Pre-elementary, ages 0-4; Elementary,
ages 5-10; Middle/High, ages 11-21; and Adult, ages 22+. (Data sources: school age, adult and adult
individual)
May 31, 2012
Page 3
Service Needs
Dissatisfaction with Mental Health Counseling
14
11
12
Elementary (n=97)
Middle/High (n=138)
12
11
Percent
10
8
6
4
2
0
0
Pre-Elementary (n=29)
Adult (n=94)
“11.3% of parents/guardians report dissatisfaction with mental health counseling for their elementary
age …”
Dissatisfaction with mental health counseling calculated using Question#46a (This service is effective in
meeting my child’s needs) in school age and adult survey. Crosstabs were used to divide dissatisfaction
by age (in school age). Disagree and Strongly disagree categories were combined, results represented in
percentages.
Functional Therapy Services
Speech/language Therapy
70
62
60
54
Percent
50
41
40
Receiving
30
30
Receiving but needs more
21
20
10
0
0
Pre-elementary
(n=29)
May 31, 2012
1
Elementary
(n=97)
15
19
9
8
4
Middle/High
(n=138)
Not receiving but needs
Adult (n=113)
Page 4
Service Needs
“41% of parents/guardians report that their middle/high school age children are receiving
speech/language therapy…”
Occupational Therapy
60
55
50
42
Percent
40
30
Receiving
29
25
Receiving but needs
more
20
17
10
0
0
Pre-elementary
(n=29)
6
11
Elementary
(n=97)
12
12
Middle/High
(n=138)
4
4
Adult (n=113)
Not receiving but
needs
“25% of parents/guardians report that their elementary age children are receiving, but need more
occupational therapy…”
Physical Therapy
40
35
34
Percent
30
28
25
Receiving
20
15
15
8
10
7
3
5
0
Receiving but needs
more
12
Not receiving but
needs
6
6
Pre-elementary Elementary (n=97)
(n=29)
1
1
Middle/High
(n=138)
1
Adult (n=113)
“34% of parents/guardians report that their pre-elementary children are receiving physical therapy
services…”
Functional therapy (speech/language, occupational and physical therapy) tables calculated using #44b,c
and d (school age and adult), #35b, c, and d (adult individual)- items (‘speech/language therapy,’
May 31, 2012
Page 5
Service Needs
‘occupational therapy,’ and ‘physical therapy’). Crosstabs were calculated using age group and need
items (listed in chart).
Dissatisfaction with Functional Therapy Services
20
17
18
15
16
Percent
14
12
11
10
10
8
Speech/Language Therapy
10
9
7
7
6
5
6
Occupational Therapy
5
4
4
Physical Therapy
2
0
Pre-elementary
(n=29)
Elementary (n=97)
Middle/High
(n=138)
Adult (n=94)
“17% of parents/guardians report dissatisfaction with speech/language therapy that their
middle/high school age students receive…”
Calculated using question 46 from school age and adult surveys. Dissatisfaction calculated by combining
“disagree” and “strongly disagree” responses.
Unmet Need for Physical Health Services
14
13
12
10
10
Percent
10
9
8
8
6
6
7
Neurology Services
Medication Management
4
2
0
0
Pre-elementary Elementary (n=97)
(n=29)
Middle/High
(n=138)
Adult (n=94)
“13% of adult individuals with autism report an unmet need for neurology services…”
May 31, 2012
Page 6
Service Needs
Physical Health Services include items: “neurology services” and “medication management.” Unmet
need includes items “my child is receiving but needs more” and “my child is not receiving but needs”combined together (Question 44j and k, school age; Question 44 j and k adult- items not included in
adult individual).
Dissatisfaction with Physical Health Services
7
7
6
5
5
Percent
5
4
6
5
5
3
Neurology Services
3
Medication Management
2
1
0
0
Pre-elementary
(n=29)
Elementary (n=97)
Middle/High
(n=138)
Adult (n=94)
“7% of parents/guardians report dissatisfaction with neurology services their middle/high school age
children receive…”
Data derived from question 46 school age and adult. Dissatisfaction calculated by combining “disagree”
and “strongly disagree” for neurology services and medication management.
May 31, 2012
Page 7
Service Needs
Unmet Need for Middle and High School Employment
&Transition Services
25
23
Percent
20
15
15
10
5
0
Transition Planning from Pediatric to Adult Healthcare
Total n=138
Vocational Training
“23% of parents of Middle/High school age children report an unmet need for Vocational Training…”
Employment & Transition Services derived from question 44, school age. Unmet (question 44) need
calculated by combining “my child is receiving, but needs more” and “my child is not receiving but
needs.” Results depicted in percentages for middle/high school students only.
Employment & Transition Services for Adults
25
Percent
15
21
19
20
13
17
15
12
11
10
10
Unmet Need
Dissatisfaction
5
0
Transitional Planning
Vocational Training
Career Counseling
Supported
Employment
Total n=92
“Thirteen percent of individuals caring for adults with autism report dissatisfaction with transitional
planning…”
Unmet need calculated by combining “my child is receiving, but needs more” and “my child is not
receiving but needs.” Dissatisfaction was calculated by adding “disagree” and “strongly disagree”
question 46. These services only included in adult, not adult individual.
May 31, 2012
Page 8
Service Needs
Unmet Need for Behavior Support Services
24
25
19
20
Percent
16
15
9
10
7
3
5
3
1
One to one support
11
9
Mobile therapy
Case management
3
3
Middle/High
(n=138)
Adult (n=113)
0
Pre-elementary Elementary (n=97)
(n=29)
“24% of parents/guardians report an unmet need for one to one support for their elementary age
child with autism …”
Behavior support services derived from school age, adult and adult individual. Unmet need calculated by
combining “my child is receiving, but needs more” and “my child is not receiving, but needs.” Question
44 school age and adult; question 35 adult individual.
18
Dissatisfaction with Behavior Support Services
16
16
14
Percent
One to one
support
11
12
10
8
8
6
8
4
4
4
2
2
0
0
0
9
Mobile
therapy
3
Case
management
0
Pre-elementary
(n=29)
Elementary (n=97) Middle/High (n=138)
Adult (n=94)
“16% of adults report dissatisfaction with case management….”
Behavior support services derived from question 46, school age and adult (satisfaction was not assessed
for adult individual). Dissatisfaction calculated by combining “disagree” and “strongly disagree.”
May 31, 2012
Page 9
Service Needs
Social Skills Training
45
40
38
40
40
35
Percent
30
24
25
Unmet Need
20
14
15
10
10
5
7
Dissatisfaction
0
0
Pre-elementary
(n=29)
Elementary (n=97) Middle/High (n=138)
Adult (n=94)
“24% of parents/guardians report an unmet need for social skills training for their pre-elementary age
…”
Social skills training derived from question 44 and 46, school age and adult. Dissatisfaction calculated by
combining “disagree” and “strongly disagree.” Unmet need calculated by combining “my child is
receiving, but needs more” and “my child is not receiving, but needs.” Data sources: school age and
adult (dissatisfaction not assessed in adult individual, so not using any of that data here).
Sexual Health Education
25
20
Percent
20
14
15
10
5
9
2
7
Unmet Need
Dissatisfaction
4
0
Elementary (n=97)
Middle/High (n=138)
Adult (n=94)
“20% of parents/guardians report an unmet need for sexual health education for their middle/high
age child with autism …”
Sexual health education derived from question 44 and 46, school age and adult. Unmet need calculated
by combining “my child is receiving, but needs more” and “my child is not receiving but needs.”
May 31, 2012
Page 10
Service Needs
Dissatisfaction calculated by combining “disagree” and “strongly disagree”- question 46. Adult individual
not included in analysis because it does not assess satisfaction levels.
Unmet Need for Summer Services
30
27
25
19
Percent
20
15
17
Summer Camp
10
10
9
7
9
Summer School
3
5
0
Pre-elementary
(n=29)
Elementary (n=97)
Middle/High
(n=138)
Adult (n=94)
“27% of parents/guardians report an unmet need for summer camp for their elementary students …”
Summer services data derived from “summer camp” and “summer school/ESY” items, from questions 44
and 46, school age and adult. Unmet need calculated by combining “my child is receiving, but needs
more” and “my child is not receiving but needs.”
Dissatisfaction with Summer Services
12
11
10
9
Percent
8
6
5
3
4
3
3
3
Summer Camp
Summer School
2
0
0
Pre-elementary
(n=29)
Elementary (n=97)
Middle/High
(n=138)
Adult (n=94)
“11% of parents/guardians report dissatisfaction with summer school for their elementary students
…”
May 31, 2012
Page 11
Service Needs
Dissatisfaction by combining “disagree” and “strongly disagree”- question 46. Adult individual not
represented because dissatisfaction was not assessed.
Unmet Needs for Adults
Mental & Emotional Health Services
25
20
11
0
15
Individual (n=19)
10
Adult (n=92)
14
5
13
0
0
Mental Health Counseling
Relationship Counseling
0
Drug/Alcohol Counseling
“11% of adults who answered for themselves report an unmet need for relationship counseling…”
Unmet need calculated by combining ‘my child is receiving but needs more/I am receiving but need
more’ and ‘my child is not receiving but needs/I am not receiving but need.’ Question 44 adult, question
35 adult individual.
Unmet Needs for Adults
Employment & Transition Services
40
35
30
25
20
15
10
5
0
16
16
18
Vocational Training
11
5
21
17
Supported
Employment
Career Counseling
11
Transitional
Planning
Individual (n=19)
Adult (n=92)
“34% of all respondents to adult surveys report an unmet need for vocational training…”
Employment & transition services items derived from Question 44 adult, question 35 adult individual.
Unmet need calculated by combining “receiving, but need more” and “not receiving, but need.”
May 31, 2012
Page 12
Service Needs
Unmet Need for Adults
Functional Therapy Services
30
25
0
20
5
15
10
Individual (n=19)
0
25
17
Adult (n=92)
14
5
0
Speech/Language Therapy
Occupational Therapy
Physical Therapy
Functional therapy items include ‘speech/language therapy,’ ‘occupational therapy’ and ‘physical
therapy.’ Question 44 adult, question 35 adult individual. Unmet need calculated by combining
“receiving, but need more” and “not receiving, but need.”
Educational services, which was depicted in the PA report was not calculated because the items were
not present across both the adult and adult individual.
38
Percent
45
40
35
30
25
20
15
10
5
0
Unmet Needs Health and Education Service and
Adaptive Equipment
26
25
20
18
16
14
14
14
12
11
11
10
10
9
6
6
Total n=271
May 31, 2012
Page 13
Service Needs
Percent
Overview of percentage reporting unmet needs by health and education service and adaptive
equipment. Unmet need calculated by combining “my child receives, but needs more” and “my child
does not receive, but needs.” Sorted in ascending order, reported as percent. School age survey only.
20
18
16
14
12
10
8
6
4
2
0
18
Dissatisfaction with Health and Education
Services
16
12
11
10
10
9
8
6
5
5
4
4
3
3
3
3
Total n=271
Overview of percentage of people reporting dissatisfaction with health and education services.
Dissatisfaction calculated by combining “disagree” and “strongly disagree” for question 46, school age.
Sorted ascending order, reported as percent. School age survey only.
May 31, 2012
Page 14
Barriers and Limitations
Barriers to Accessing Primary Health Care
25
21
20
17
15
10
5
1616
12 13
10
9
6
5
19
1716
10
9
7
7
8
13 13
10 11
88
11
9
Pre-elementary (n=29)
44
0
0
1
Elementary (n=97)
0
Middle/High (n=138)
Adult (n=92)
“10% of caregivers of pre-elementary children cite transportation as a barrier to accessing primary
health care…”Data derived from question #43 (school age and adult).
Barriers to Accessing Dental Services
25
20
15
10
5
0
23
21
17
7485
1010 10 1010
9
12
1012
7
3345
10 1010
8
7
99
Pre-elementary (n=29)
065
Elementary (n=97)
Middle/High (n=138)
Adult (n=92)
“7% of caregivers of pre-elementary children cite transportation as a barrier to accessing dental
services…”
Data derived from question #43 (school age and adult).
1
Current Employment Status
70
60
Percent
50
26
40
Individuals answering for
themselves (n=19)
30
Caregivers answering for adults
(n=92)
16
20
10
36
26
14
3
0
Full-time
Part-time
Looking for a Job
“Of those individuals answering the survey for themselves, 26% are employed part-time…”
Data derived from adult and adult individual. Adult included response categories: part-time with
support, part-time without support, full-time with support, full-time without support. The part-time
categories were combined and the full-time categories were combined. Vertical axis altered to represent
70 point scale.
Percent
Difficulty in the Job Search Process
47
50
45
40
35
30
25
20
15
10
5
0
Finding
employment
opportunities
47
26
26
Filling out
applications
Creating a
resume
Getting an
interview
42
42
Interviewing
Following up
after an
interview
Adult Individual n=19
“47% of adults (answering the survey for themselves) report difficulty in finding employment
opportunities…”
May 31, 2012
Page 1
Data derived from adult individual, not assessed in adult. Response categories for each category
included “very difficult” and “difficult”- these two were combined. Vertical axis altered to represent 50
point scale.
Percent
Employment and Transition Services
10
9
8
7
6
5
4
3
2
1
0
9
7
5
3
5
Receiving but needs more
3
Transition
Planning
Vocational
Training
2
2
Career
Counseling
Not receiving but needs
Supported
Employment
Total n=111
“7% of adults report that the person in question is not receiving but needs transition planning…”Data
derived from adult and adult individual surveys.
Percent
Discomfort in the Work Environment
50
45
40
35
30
25
20
15
10
5
0
47
42
26
Working in a group
Asking for help
Asking for time off
Adult Individual n=19
Vertical axis altered to represent 50 point scale.“26% of adults answering the survey for themselves
report difficulty working in a group…”Data derived from adult individual, not assessed in adult.
Discomfort in work environment calculated by combining “disagree” and “strongly disagree” categories
for each statement on question 23. Asking for help calculated by combining “I feel comfortable asking
my peers for information or help” and “I feel comfortable asking an authority figure for information or
help.”
May 31, 2012
Page 2
Unwanted Outcomes
12
Percent
10
8
ER visit
6
Hospital Admission
4
Police Called
2
0
Pre-elementary Elementary (n=97)
(n=29)
Middle/High
(n=138)
Adult (n=92)
“9% of caregivers of adults report calling the police…”
Data derived from question #27, 28 and 34 (school age and adult).
Police Contact by Age
12
9 10
Percent
10
8
Pre-elementary (n=29)
6
Elementary (n=97)
4
2
0
0 0
Police Called
0
1 1
2
Police
Warning
Issued
1
0 0
2
0 0
1 1
2
0 0
1
Child
Served time in Served time in
adjudicated
jail
juvenile
detention
“9% of caregivers of adults report calling the police…”
Data derived from question #34 (school age and adult).
Middle/High (n=138)
Adult (n=92)
Percent
Reasons for Hospital Admission by Age
4
3
3
2
2
1
1
0
3
3
3
3
2
2
1
1
0
0
1
1
1
0
1
0
1
1
1
000
0
1
1
Pre-elementary (n=29)
000
Elementary (n=97)
Middle/High (n=138)
Adult (n=92)
“3% of caregivers of elementary children report aggression as the reason for their child’s hospital
admission…”
Data derived from question #28a (school age and adult).
Dissatisfaction with Hospital Care
3
Percent
2
2
2
2
Discharge planning
2
1
1
Inclusion of parent in treatment
planning
1
1
1
Quality of treatment
1
0
0
Elementary (n=97) Middle/High (n=138)
0
Adult (n=92)
“1% of caregivers of adults with autism report dissatisfaction with the inclusion of parent in treatment
planning…”
Data derived from question #28b-d (school age and adult). Dissatisfaction calculated by adding
‘dissatisfied’ and ‘very dissatisfied.’